Thinking about a J-Pouch

I had my J-pouch surgery after being turned away by several colorectal surgeons, so I have some experience with that path. Do you know if the surgeon you consulted does many J-pouches?

We’re about the same age and I have noticed that I heal more slowly than I used to. Everyone is different, so it might be useful to consider whether you heal reasonably quickly.

Do you know what was left behind after your 2010 surgery? That could affect your surgical options. Was a J-pouch considered at that time?

Thank you for your reply.  I do know the details of my surgery.  I have 10-12 cm of rectal stump left behind for the very reason that a J-Pouch might be considered. So technically it is a possibility.  Also, the surgeon I consulted does 2-3 per year.  She said that most surgeons aren't seeing as many because the biologics are working so well that the need for Total Colectomy surgery is much lower than it used to be.  At least, that's what she told me.  Further, I have a son in law who is now 37 yo, he had UC and total colectomy when he was 25 yo.  He went on to have J-pouch sx and did very well.  He encourages me to check with other doctors and see if I get a different viewpoint. 

Please.

Also do some reading in here on good and bad points of a pouch.

I had a team of surgeons.  One who did my pouch. And was advised. Which she didn't need. By three other colorectal surgeons who also performed pouch surgeries.

I was told from the get go seeing where my uc was located in my colon the pouch may not work. And it didn't.  But I tried. I'm older than you but had the surgery at 58.

By 60 I had an end ileo because although my pouch was healthy we could never figure out why it wasn't working correctly. And for two plus years it was actually worse than the uc I had before.

Anyway.

Yes. Get more opinions.

If they say no. Ask why.

You did get an explanation from the first. You should get explanations if more no's are answers to getting a pouch.

My answer may not help much and you can disregard it. No biggie.

I wish I would have went straight to the end ileo because I'm good with it.

I have everything in place to get another pouch. But I ain't even considering it. My end is too easy.

Richard.

Richard, Thank u for your insights and sharing your experience with trying a j-pouch.  I am going to speak to more surgeons who may have more experience than this surgeon with j-pouch sxs.  My son in law spoke with 3 before he found one who he had confidence in.  And, he is doing great.  Thx again.

Only speaking for myself but I'm totally happy with my pouch. I'm in my late 40's but I lift weights every day, jog, coach a high school wrestling team.

I have no issues at all.

I personally think there are more successful J pouch stories than unsuccessful ones.

Keep trying and good luck.

Richard.

I hesitate to give opinion.  But I guess I will.  I have had nothing but problems.  I’d give anything to go back to a bag.  Cuffitis and pouchitis.  I’m doing pelvic floor therapy now.  New Colorectal surgeon doesn’t think it will help.  My main issue is my anal canal.  I never thought that little area could give out so much pain.  So now I am going to try Botox.  I just want my life back.  I never would want to tell you not to do it.  But there are so many other problems that can occur also.  My surgeon was shocked my previous surgeon even did it on me when I was 44 yrs old.  They don’t recommend it.  Our bodies slow down etc as we age.  I’d give anything to have my life back and would love the bag.  Sadly my jpouch is top notch it’s just the anal/rectal canal that is killing me.  Please take my message and truly look into everything.  Sometimes change isn’t better.  I had no choice I had pre- cancer thru my whole colon.  Also, if only we could find a doctor who has a jpouch. Boy would they understand.  I wish you the best.  Thank you for letting me share my nightmare.  

If I were a candidate for a J-pouch, I personally would try the J-pouch that way I can exhaust all options and say I tried everything I could. I say follow your heart and always trust it. Best of luck!

Thx for your thoughts!!

@JPouchWannabe posted:

Thx for your thoughts!!

Your welcome/ Let us know us know how everything goes

Hi,

I had a jpouch for 20 years. I had to take cipro everyday for chronic pouchitis. A few months ago I started getting severe rectal and anal inflammation that led to abscesses and fistulas. I had my jpouch disconnected last month and now have a loop Ileostomy while my perianal area heals. My surgeon might reconnect my jpouch again at some point.  Not sure if I want to risk going back to it again. It’s not fun wearing a bag but I’m pain free and feeling much healthier.

I had my J-Pouch surgery at 46, over 20 years ago. The first year was quite the challenge. I just wanted my life back. After a year, I was good. There have been many ups and downs. I had chronic pouchitis for 18 years, taking antibiotics for that time. Once I retired and my through the roof stress level went away, the pouchitis went away too. Overall, the pouch, for me, needs care and attention. Sometimes more than others. I am glad I got the pouch, though. I hated the bag but had the luxury to hate it because I knew it would probably go away. I just know that if I hadn’t tried the pouch, I would question the decision forever. I would do it over again if I had to.

Thank you for your thoughts!   My son in law has had the procedure and is doing great. He encourages me to consider it, too.  I might go for a consult to discuss the option sometime soon.  

I have FAP so I may have a different experience than you. I would explore a j-pouch, for me it gave me freedom. I've had some issues but they are minimal compared to dealing with a bag.
I'd explore Mayo Clinic, they did my surgeries and a friend had an IPA made after multiple medical mistakes resulted in her colon being removed. Mayo has endless data on success, bowel movements, common issues etc. They would have data related to age and how that affects the surgery success.

You sound like you're healthy and that helps a lot with surgery recovery and success.

Also look into Cleveland Clinic, they are similar to Mayo and have a long history of j-pouch surgeries.

Good luck!

Thank you for that lead or leads.  I’ll look at Mayo and the Cleveland Clinic resources.  May I ask what “FAP” refers to?  I’m not familiar with that term or acronym.

Familial Adenomatous Polyposis, is a rare mutation of the APC gene (tumor suppressor gene).

FAP is also a slang term so search results are always interesting.

Ah.  Thank you!

@JPouchWannabe posted:

Thank you for that lead or leads.  I’ll look at Mayo and the Cleveland Clinic resources.  May I ask what “FAP” refers to?  I’m not familiar with that term or acronym.

https://www.youtube.com/watch?v=JQpt3b-jIAw

While you will doubtless be able to find a sufficiently experienced  surgeon who will be able to perform the procedure with a high degree of technical skill, it is important to consider what comes after surgical recoveries from multiple procedures to create and attach the pouch.  There is a long period of "learning how to go to the bathroom" as my own surgeon described it, which is not the same as with a colon. It took a year for my brain to adjust to the signals from my new anatomy. There are frequent BMs - you may get down to 6-7 a day if you are "average" - and quite painful "burning" for some months once reconnected.  This means ointments and installation of a bidet (sooner the better.) There is interrupted sleep probably forever, and possibility of some leakage either regularly or occasionally. There will be modified diet after surgery. For many (most?), some dietary modifications continue into perpetuity.  A good number develop pouchitis - I think around 30% - and therefore need medication, and the pouchitis can recur or require chronic meds.  For people with a mucosal "cuff" retained, cuffitis can develop.   Strictures are not uncommon at the stoma area surgical reconnection site,  and pouches are generally scoped at intervals for screening in any event.  

It's  certainly reasonable to consider a pouch, especially given issues you describe with your stoma. It is life-altering surgery, certainly.  But the ostomy is the devil you know. Some or all of what I mention is likely to occur with a technically perfect pouch surgery in the hands of a highly experienced surgeon.  

Thank you for your in depth and realistic description of the potential for good….and/or bad times/results from this procedure.  I'm interested to explore the idea with a surgeon I trust, but I have no illusions about a perfect result.  I guess I’ve wanted  to do this for 14 yrs and now have the opportunity.  I’m not sure I’m willing to go that road after hearing the many cons.   Thanks again very much!

Every choice (including doing nothing) has both pros and cons. Only you will know what's right for you, but I'd caution against treating a list of (only negative) possibilities as a forecast of your future. My J-pouch has enabled me to engage in a variety of activities that would have been problematic with an ostomy, and I had no idea at the time of my surgery that I'd start doing those things.

What types of activities can you do now that you couldn’t before getting the j-pouch?  If you don’t mind me asking.

I don’t mind at all. My physical activity before surgery was mainly limited by how crappy I felt with out-of-control IBD. I was 44 years old when I had my J-pouch surgery. I subsequently took up martial arts (Japanese Ju-Jitsu) when my daughter asked me to study it with her, and we both eventually became instructors. I learned to scuba dive which greatly improved my vacations, and I dive regularly. Both of these would have been problematic, I think, with an ileostomy.

Thanks Scott!  Its replies like yours that may give me the courage to go through with a j pouch.  Thanks so much.

Scuba diving sounds great.

I have a reef aquarium.

I would love to scuba or snorkel just to look. And would. I as you know Scott. Have an end ileo. It would and doesn't cause issues in the water. I swim in my sons pools with no issues. So I wouldn't think diving would be an issue.  Not saying it wouldn't. But the pool doesn't affect it. Now. The Hot tub I stay out of.  That I  think would affect the adhesion.

Only thing I do is not eat before I swim. As we all know as soon as we eat. It pushes out what's in there. Lol.

As for the topic.

I would try the pouch.

I did.  I didn't want any regrets by not trying the pouch and I have none. No regrets.

Richard.

So are you saying that a J pouch failed and you went back to an end ileostomy?  

@Mysticobra posted:

Scuba diving sounds great.

I have a reef aquarium.

I would love to scuba or snorkel just to look. And would. I as you know Scott. Have an end ileo. It would and doesn't cause issues in the water. I swim in my sons pools with no issues. So I wouldn't think diving would be an issue.  Not saying it wouldn't. But the pool doesn't affect it. Now. The Hot tub I stay out of.  That I  think would affect the adhesion.

<…>

Richard.

I wasn’t concerned about the bag and seal being waterproof. I wonder how a bag would behave at depths of 80-100 feet, or compressed under a wetsuit, or both. I don’t know that it can’t be done (or accommodated), but I’ve been happy to not have to worry about it.

@JPouchWannabe posted:

Thx for your thoughts!!

I do not want to assume so I am going to ask. You have a end ileostomy right?

Yes, I do.

@JPouchWannabe posted:

Yes, I do.

Cool! So do I but I have Crohns disease.

I would hate for you to go through more major surgery at 65 years old. But if you feel your heart is guiding you to a J-pouch then I say go for it!

@Scott F posted:

I wasn’t concerned about the bag and seal being waterproof. I wonder how a bag would behave at depths of 80-100 feet, or compressed under a wetsuit, or both. I don’t know that it can’t be done (or accommodated), but I’ve been happy to not have to worry about it.

Yea.

Going to depth may cause issues. Being in a pool does not compare. I would want to try it.

I'm happy you able to do the scuba diving. I've never done it. Or even snorkeled.

If given the chance snorkeling is what I'd like. Scuba diving is a little off my list.  Lol.

Richard.

P. S.

With my luck it would probably act like a flotation device. And pop me back to the surface. Lol.

@JPouchWannabe posted:

So are you saying that a J pouch failed and you went back to an end ileostomy?  

I never had an end prior to my J pouch. I had a temporary while everything was healing. During the process I had to have emergency surgery and while she was in there she took down the temporary ileo and hooked my pouch up.

It happened pretty fast. Less than a month. 

I think back and maybe not hooking me up that soon may have or may not have been the problem. Probably not.

I had a healthy J pouch. It just never worked. We don't know why.

So I was just sick as a dog with the pouch and had it removed after two plus years.

That's when I got the end ileo. Which works great.

But I tried the j pouch as to not have any regrets. And I don't.

Richard.

I hope that's understandable.

I'm not that good at explaining things.

Thanks for your in put.  All of your experiences help!!

@JPouchWannabe posted:

Thanks for your in put.  All of your experiences help!!

Your welcome. I hope you can update us when you can, would love to hear your update

It’s so difficult to answer this. I have a J-Pouch 20 years and have had a lot of issues (rectocele cystocele and prolapse (all three) pretty miserable as far as what I’m able to eat. Irritation. Incomplete emptying.

That being said I hated the “bag” and still can’t bring myself to go back to it even though doctors have said it might be better.  I am thankful to feel whole again on the outside but the compromise is really having to watch my diet and to be frank it’s quite exhausting, no issues with incontinence leakage.  Every case is so different!

Remember too, on this site you are going to be reading mostly from those with bad outcomes and there are plenty who do not post who are fine. Get a second opinion on “your” situation. Your life the rest of it is worth it. Don’t let physicians start using the “at your age” comments as if your on your last leg anyway. I wouldn’t take to heart opinions on here too much but find out from your doctor the probability of success.

Given this I would ask yourself if living with one is interfering in your personal life any way? Relationships?
Activities? If not, and you are out there doing things and active and it’s not a big inconvenience or affecting areas of your life that are important then I would keep it!